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Determinants of retention in care of newborns diagnosed with sickle cell disease in Liberia: Results from a mixed-methods study of caregivers

High-income nations have established that early diagnosis and preventive treatment reduces early deaths in sickle cell disease (SCD). However, in low-/middle-income countries where SCD is common, attrition from clinical care is common. Reasons for poor retention in care are multi-factorial and poorl...

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Autores principales: Udhayashankar, Kanagasabai, Franklin, Patience D., Nuta, Cecelia J., Cherue, Adolphus K., Haq, Heather, Thompson, Debbe, Tubman, Venée N.
Formato: Online Artículo Texto
Lenguaje:English
Publicado: Public Library of Science 2023
Materias:
Acceso en línea:https://www.ncbi.nlm.nih.gov/pmc/articles/PMC10072487/
https://www.ncbi.nlm.nih.gov/pubmed/37014836
http://dx.doi.org/10.1371/journal.pgph.0001705
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author Udhayashankar, Kanagasabai
Franklin, Patience D.
Nuta, Cecelia J.
Cherue, Adolphus K.
Haq, Heather
Thompson, Debbe
Tubman, Venée N.
author_facet Udhayashankar, Kanagasabai
Franklin, Patience D.
Nuta, Cecelia J.
Cherue, Adolphus K.
Haq, Heather
Thompson, Debbe
Tubman, Venée N.
author_sort Udhayashankar, Kanagasabai
collection PubMed
description High-income nations have established that early diagnosis and preventive treatment reduces early deaths in sickle cell disease (SCD). However, in low-/middle-income countries where SCD is common, attrition from clinical care is common. Reasons for poor retention in care are multi-factorial and poorly understood. The objective of this study was to identify factors that influence caregiver decision-making around chronic health care needs of a child with SCD. We conducted an exploratory sequential mixed methods study of caregivers of children diagnosed with SCD during a newborn screening program in Liberia. Caregivers completed questionnaires and semi-structured interviews designed to identify drivers of health decision-making. Interviews were digitally recorded, transcribed, coded, and analyzed using semi-structured thematic analysis to identify themes. Data integration occurred by using quantitative results to expand and clarify the qualitative themes. Twenty-six caregivers participated in the study. The mean age of the child at the interview was 43.7 months. Five themes influencing health decisions were identified: grief, the importance of support networks, stigma, perceived benefits, and the burden of chronic disease. The five themes crossed multiple domains of a socioecological model and identified complex interactions between family, community, social and cultural norms, and organizational structures. This study highlights the importance of community awareness of SCD and appropriate health communication by healthcare workers. Healthcare decision-making is multifactorial and complex. These results provide a framework for improving retention in care. In a low-resource country such as Liberia, much can be done by leveraging existing resources and cultural practices.
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spelling pubmed-100724872023-04-05 Determinants of retention in care of newborns diagnosed with sickle cell disease in Liberia: Results from a mixed-methods study of caregivers Udhayashankar, Kanagasabai Franklin, Patience D. Nuta, Cecelia J. Cherue, Adolphus K. Haq, Heather Thompson, Debbe Tubman, Venée N. PLOS Glob Public Health Research Article High-income nations have established that early diagnosis and preventive treatment reduces early deaths in sickle cell disease (SCD). However, in low-/middle-income countries where SCD is common, attrition from clinical care is common. Reasons for poor retention in care are multi-factorial and poorly understood. The objective of this study was to identify factors that influence caregiver decision-making around chronic health care needs of a child with SCD. We conducted an exploratory sequential mixed methods study of caregivers of children diagnosed with SCD during a newborn screening program in Liberia. Caregivers completed questionnaires and semi-structured interviews designed to identify drivers of health decision-making. Interviews were digitally recorded, transcribed, coded, and analyzed using semi-structured thematic analysis to identify themes. Data integration occurred by using quantitative results to expand and clarify the qualitative themes. Twenty-six caregivers participated in the study. The mean age of the child at the interview was 43.7 months. Five themes influencing health decisions were identified: grief, the importance of support networks, stigma, perceived benefits, and the burden of chronic disease. The five themes crossed multiple domains of a socioecological model and identified complex interactions between family, community, social and cultural norms, and organizational structures. This study highlights the importance of community awareness of SCD and appropriate health communication by healthcare workers. Healthcare decision-making is multifactorial and complex. These results provide a framework for improving retention in care. In a low-resource country such as Liberia, much can be done by leveraging existing resources and cultural practices. Public Library of Science 2023-04-04 /pmc/articles/PMC10072487/ /pubmed/37014836 http://dx.doi.org/10.1371/journal.pgph.0001705 Text en © 2023 Udhayashankar et al https://creativecommons.org/licenses/by/4.0/This is an open access article distributed under the terms of the Creative Commons Attribution License (https://creativecommons.org/licenses/by/4.0/) , which permits unrestricted use, distribution, and reproduction in any medium, provided the original author and source are credited.
spellingShingle Research Article
Udhayashankar, Kanagasabai
Franklin, Patience D.
Nuta, Cecelia J.
Cherue, Adolphus K.
Haq, Heather
Thompson, Debbe
Tubman, Venée N.
Determinants of retention in care of newborns diagnosed with sickle cell disease in Liberia: Results from a mixed-methods study of caregivers
title Determinants of retention in care of newborns diagnosed with sickle cell disease in Liberia: Results from a mixed-methods study of caregivers
title_full Determinants of retention in care of newborns diagnosed with sickle cell disease in Liberia: Results from a mixed-methods study of caregivers
title_fullStr Determinants of retention in care of newborns diagnosed with sickle cell disease in Liberia: Results from a mixed-methods study of caregivers
title_full_unstemmed Determinants of retention in care of newborns diagnosed with sickle cell disease in Liberia: Results from a mixed-methods study of caregivers
title_short Determinants of retention in care of newborns diagnosed with sickle cell disease in Liberia: Results from a mixed-methods study of caregivers
title_sort determinants of retention in care of newborns diagnosed with sickle cell disease in liberia: results from a mixed-methods study of caregivers
topic Research Article
url https://www.ncbi.nlm.nih.gov/pmc/articles/PMC10072487/
https://www.ncbi.nlm.nih.gov/pubmed/37014836
http://dx.doi.org/10.1371/journal.pgph.0001705
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